As those who live close enough to see me in person know I have had some stuffgoing on with my health. I mean, you can tell at first glance that something is up when you see that I’m wearing a mask. So I’ve had a lot of conversations about my health with students, clients, and random Winona community members. I have my patter down when I’m introducing myself to a new group, “Hi I’m Elle Newman, part time coach, full time ninja. Just to let you know, the mask is for chemical sensitivities not because I’m sick… I mean clearly I’ve got stuff going on with my health but it’s not contagious.” There’s polite laughter and then we just get down to talking about whatever it was we met to talk about.
For my readers who don’t see me very often here’s what’s going on. I’ve developed Multiple Chemical and Fragrance Sensitivities (MCS). This is an autoimmune issue where basically I have relatively large reactions to relatively small amounts of toxins. My symptoms when I get triggered include: dizziness, severe headaches, shortness of breath, brain fog, and severe mood swings. Things I react to include: exhaust, perfume and cologne, fabric softener (even on other people’s clothes), dry cleaning (again even on other people many feet away from me), air fresheners, bleach, most cleaning products in general are a landmine of fragrance and chemicals, pesticides, scented candles… the list goes on and on, hence the mask.
Sometimes MCS is set off by a poisoning event or prolonged exposure to toxins, sometimes it’s triggered by an illness. Which brings me to the other thing I’m dealing with; late stage Lyme Disease.
As I write this I am actually feeling pretty good. I went through treatment for Lyme last October and my good days are getting better and more frequent. I have a busy self care regiment and wear a mask so the time spent feeling sick from exposure to something that triggers me is pretty small. Headaches that put me to bed are an occasional experience rather than a daily one, brain fog is light when it shows up and passes quickly, I can’t remember the last time I felt dizzy. I still have less energy than I used to and I need to be careful not to over-schedule myself because when I do it takes days to recover, but things are significantly improved.
It’s possible that I could recover from MCS. The doctor I worked with actually developed MCS from Lyme and I can attest to the fact that he’s no longer wearing a mask. It’s not a quick recovery; my body needs time to detox, my liver needs to be able to heal, and my brain needs to learn it doesn’t need to freak out. I also am keenly aware that many people never recover so I try to balance taking care of myself, setting a stage where recovery is possible, and creating a meaningful life in my mask.
With both Lyme and MCS there are no guarantees. I can’t just give my loved ones a timeline, I can’t just say, “well, in six months I will have the energy to travel.” I might. This is my hope, but realistically speaking, it’s an unknown. Most plans I make these days have the “as long as I have the energy” condition attached to it. This is, however, a huge step up from feeling like I just couldn’t make anyplans because I knew for sure I wouldn’t have the energy to pull them off.
I’m excited to start posting again, to turn some of my journaling into blog posts and essays sharing the effects of chronic illness in my life, my work, and my relationships. For the time being I’m not going to share the specifics about my care plan in a public forum. I’m happy to have private conversations about it especially with others who are suffering from Lyme, MCS, or other autoimmune issues. Eventually I will likely add my voice to some of the environmental illness forums or Lyme forums that I follow, but for now the only debating I have energy for is the one that goes on inside of me as I decide how to proceed.
Until next time,